Sudden Hearing Loss: Want to connect with others

Posted by eileen123 @eileen123, Jul 22, 2020

Hello, I am new to this group. At age 56, I recently suddenly lost all hearing in my right ear, and I am trying to process this significant impact and find support from others who have experienced the same sudden hearing loss. I welcome your feedback. I am in good hands with very experienced doctors at Mass Eye and Ear in Boston, but my treatment plan has not worked to date (oral steroids and ear injections). I have profound loss in right ear, and above average hearing in my left ear. Thanks for your insight and support. Eileen

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@julieo4

The other best known captioned phone is CaptionCall. Both Captel and CaptionCall are good quality.

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I have a Caption Call phone and it is pretty good. Main problem is that it often does not print out what is being said accurately. This is really an issue when dealing with banks and businesses where numbers are important. I have learned to always tell people at the beginning of the conversation about my hearing loss, the phone and ask them to speak clearly, slowly. Most people are very helpful but tend to forget as the conversation goes on. As of three weeks ago I can no longer hear anything even with hearing aids so I really rely on this phone. I also am doing a lot more business stuff online.... another learning curve.

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For years I have had to use the caption on the TV. It doesn't always say what is being said but most of the time, I wouldn't know the difference since my hearing is worse. I don't exactly know how to read the charts they give me but the numbers are down to 90. I think I have lost 90% of my hearing? Can anyone tell me? Thank you. Woogie.

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@erikas

@wendymb @nla4625 The social aspect of hearing loss is not something that was part of my awareness. My training and permanent Mayo Clinic is in Behavioral/Mental Health. Moving forward I will certainly remember to use this new awareness forward, especially during social gatherings and group work of any kind. I really do appreciate your teaching me this.

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@erikas Thank you for your nice note and for making every effort to learn about the challenges all of us with medical problems, not just hearing issues, face. A few other people in the hearing discussion group posted things about the importance of professionals working to help people with hearing issues knowing more about those challenges. I don't know the ins and outs of how we hear, but I do know what happens when you have only one good ear. All noise comes in at the same level and intensity, I often don't know where it is coming from, and my brain can't filter out background noise and let me focus on what I want or need to hear. It's just noise. To understand, I think if you sat in a car with 4 people and turned the volume of the radio up to the highest level and tried to carry on a conversation in a normal voice you would get an idea of how hard it is to hear when your brain can't filter out background noise and you can't hear comments from people in the back because you don't know they are speaking. Then turn away from the other person next to you so you can't see his/her face. Trying to hear when you can't filter out background noise, don't know where sound is coming from, and can't see the face of someone talking to you is exhausting, terribly frustrating and really impossible. If I am in a group setting, there is only so much I can deal with before I have to zone out or leave...which is why it is easier not to put myself in those situations. Anyway, I really applaud you for listening to the people on this site. We're all learning from each other. I'm really thankful for the wonderful work MayoConnect is doing to provide so much valuable information, for the knowledge, support and countless hours your volunteer mentors are spending to help us, and for the contributions my fellow travelers on the road to better health are making. Thank you all. Nancy

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@judyca7

I have a Caption Call phone and it is pretty good. Main problem is that it often does not print out what is being said accurately. This is really an issue when dealing with banks and businesses where numbers are important. I have learned to always tell people at the beginning of the conversation about my hearing loss, the phone and ask them to speak clearly, slowly. Most people are very helpful but tend to forget as the conversation goes on. As of three weeks ago I can no longer hear anything even with hearing aids so I really rely on this phone. I also am doing a lot more business stuff online.... another learning curve.

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@judyca7 I am amazed to see you talking about being able to print out the conversation on your Caption Call! I do find it ever so useful to have the other speaker's comments permanently recorded on my phone screen but was never aware of any possibility of recording them! I wonder if this is an option that only Caption Call has. I can easily find out by calling Captel. Perhaps it's an option that is only available in their most recent models. When the print out is not accurate, can you then consult your phone screen and correct the errors in the print out?

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@judyca7

I have a Caption Call phone and it is pretty good. Main problem is that it often does not print out what is being said accurately. This is really an issue when dealing with banks and businesses where numbers are important. I have learned to always tell people at the beginning of the conversation about my hearing loss, the phone and ask them to speak clearly, slowly. Most people are very helpful but tend to forget as the conversation goes on. As of three weeks ago I can no longer hear anything even with hearing aids so I really rely on this phone. I also am doing a lot more business stuff online.... another learning curve.

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Good that you are asking for clarification on those conversations. Also that you are upfront about your hearing issues. I wonder if your hearing aids have activated telecoil components in them? You say you're not hearing well with them, but the telecoil mode might make a big difference for you. While telecoils can connect hearing aids to many audio devices, they were first devised to connect to telephones; thus the name telecoil. Have you mentioned this sudden hearing loss of three weeks ago to your hearing healthcare provider?

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@woogie

For years I have had to use the caption on the TV. It doesn't always say what is being said but most of the time, I wouldn't know the difference since my hearing is worse. I don't exactly know how to read the charts they give me but the numbers are down to 90. I think I have lost 90% of my hearing? Can anyone tell me? Thank you. Woogie.

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@woogie .... Not knowing what the context of your "90" would be... I might venture a guess... I am profoundly deaf in my left ear.. but my hearing tests in my right ear show at what decibel (db) level I respond to the beeps... the noise in the test... In my right ear a noise has to be at 60db in certain frequencies..(ambient noise in a social situation can easily be at 60db ... so if someone were to be talking to me they would have to be speaking at a higher level (louder) for me to hear.... In my left ear A noise has to be at 90 db.. (that is like a jet plane)... for me to hear ... ... Please tell us in what context are your "numbers" ...Ken

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This is April 2022 I have had hearing aids just over a year. About two weeks ago had sudden hearing loss in one ear and a little in the other. Had the one ear cleaned out of wax, none in the other year. That ear did improve quite a bit but not all the way. Went back to have it checked... the PCP said it was all clear....... went to wear got the hearing aid.... said see audiologist which did on this past Friday. She said that I have SSHL and should have been on it in a couple of days. Well, never heard of it..... AND I was trained as a teacher of the deaf years ago... No one I know, including retired doctors/nurses, have ever heard of this. So I'm a bit angry that my PCP didn't say that yes, I had was but could also have sudden hearing loss and to see an otolaryncologist asap. So it took me about 11 days to get this far and since Easter weekend cannot do anything until tomorrow, Monday and doubt I will get an appointment within a week...... so this absolutely makes no sense at all.
I'm quite angry and feel I responded well for a busy individual who had something happen but had reasonable thoughts of what was happening.
Why wouldn't the primary care doctor mention it as " well, you may want to get this checked apap" I doubt they've ever heard of th is either.
So disappointed. I have no idea what this means. Have read about the steroids..... and the shots........ but it seems that they don't really work. At least in the few comments I read. I will read more but anxious to hear where to go and what to do. I'm in MA just below the VT line. We go to Boston a lot but Dartmouth is the closest large hospital really or in Worcester. This sounds like there is only one or two treatments.
So looking for advice. See the last posts are two years old so I guess this isn't that active. Maybe it will start up again. Thanks

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I have no idea if anyone is monitoring this. I am 73 and got hearing aids just over a year ago. I had a hearing test, did have some wax removed from ear and then the hearing aids. About two weeks ago, after a trip down south I experienced a sudden profound loss in my left ear. So I made an appt to have my PCP check/clean for ear wax. That was done and the hearing improved quite a bit. But it wasn't right. The hearing aids weren't working right... Checked with Costco where I got the hearing aids from.... they were working fine.. they suggested go back to the PCP I did but also made an appt with the audiologist. It was probably 12 days before I saw the audiologist-- just on Good Friday 2022. At the end of the day and she was shocked that I didn't jump on this immediately........ since I, and no one I know, has ever heard of this is was really shocked and told it may be too late.. I don't even know what she means by that etc........... So hoping tomorrow I can get into see an otolaryncologist.

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@skihunt507

This is April 2022 I have had hearing aids just over a year. About two weeks ago had sudden hearing loss in one ear and a little in the other. Had the one ear cleaned out of wax, none in the other year. That ear did improve quite a bit but not all the way. Went back to have it checked... the PCP said it was all clear....... went to wear got the hearing aid.... said see audiologist which did on this past Friday. She said that I have SSHL and should have been on it in a couple of days. Well, never heard of it..... AND I was trained as a teacher of the deaf years ago... No one I know, including retired doctors/nurses, have ever heard of this. So I'm a bit angry that my PCP didn't say that yes, I had was but could also have sudden hearing loss and to see an otolaryncologist asap. So it took me about 11 days to get this far and since Easter weekend cannot do anything until tomorrow, Monday and doubt I will get an appointment within a week...... so this absolutely makes no sense at all.
I'm quite angry and feel I responded well for a busy individual who had something happen but had reasonable thoughts of what was happening.
Why wouldn't the primary care doctor mention it as " well, you may want to get this checked apap" I doubt they've ever heard of th is either.
So disappointed. I have no idea what this means. Have read about the steroids..... and the shots........ but it seems that they don't really work. At least in the few comments I read. I will read more but anxious to hear where to go and what to do. I'm in MA just below the VT line. We go to Boston a lot but Dartmouth is the closest large hospital really or in Worcester. This sounds like there is only one or two treatments.
So looking for advice. See the last posts are two years old so I guess this isn't that active. Maybe it will start up again. Thanks

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I had a similar experience with sudden hearing loss. No clue from any professional about how important prompt response is. Consequently due to lack of urgency the loss was permanent.

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I'm so sorry that you experienced SSHL and weren't advised by your PCP to go to an ENT immediately. They do say that treatment for SSHL is best when received 1-3 days of the SSHL event. That being said, as you've read, treatment often doesn't work.

I had SSHL and lost essentially all of the hearing in my right ear. I took steroids for two weeks, but none of the hearing came back. I hope for better outcomes for you.

Another frustration part of SSHL, aside from many people being unaware that it exists and that treatments are often unsuccessful, is the fact that we only ever know the cause in about 10% of the cases. So tragedy strikes and we don't even get to find out why it happened. Quite frustrating.

I experienced some depression when it happened to me. Researching solution options helped pull me out of my depressive thoughts (like: Why did this happen to me? How can I continue teaching/working? What am I going to do??) and my angry thoughts (like: Why was my first ENT doctor such a jerk and so casual about my VERY MAJOR HEARING LOSS??) and put me on a proactive path toward finding the best way to cope with my new reality.

I hope you had a successful visit with the otolaryngologist!

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